Jessica L. Roberts on genetic information and the law

There were virtually no laws, and little thought, concerning the use of human cells, patients’ rights and genetic information in the early 1950s as documented in the current bestseller, The Immortal Life of Henrietta Lacks. Poor, uneducated and black, her cancer cells were taken without her permission and, with an unprecedented ability to live and reproduce endlessly, used in the development of countless medical miracles from polio vaccine to cloning. Her cell lines are still being used today, but her family wasn’t even aware of her role in modern medicine until years after her death, and received neither recognition nor any of the financial rewards. Today, it’s a different story with laws governing every facet of patient privacy, cell use and genetic information. University of Houston Law Center Professor Jessica Roberts is an expert on the legal protections afforded genetic information, specifically as they pertain to discrimination in insurance, employment and other areas. Roberts took a few moments to answer questions about this important area of the law:

Q. Define genetic law and tell us more about your research in this area.

Issues related to genetic information arise in many different places within the law—insurance, health information, employment, intellectual property, and even criminal. Within this incredibly diverse area, I specialize in the protection against genetic-information discrimination, particularly the Genetic Information Nondiscrimination Act (GINA) passed in 2008. I have written two articles on that subject (The Genetic Information Nondiscrimination Act as an Antidiscrimination Law, 86 Notre Dame L. Rev. 597 (2011) and Preempting Discrimination: Lessons from the Genetic Information Nondiscrimination Act, 63 Vand. L. Rev. 439 (2010)) and am currently co-authoring two shorter pieces dealing with the relationship of genetic information to race.

Q. How is genetic information used by insurance companies today?

GINA prohibits health insurers from acquiring genetic information for underwriting purposes; from requesting or requiring genetic information or genetic testing; and from using genetic information to determine coverage, eligibility, or premiums. Pre-GINA, the Health Insurance Portability and Accountability Act limited health insurers’ ability to use genetic information. However, these statutes do not apply to other kinds of insurance that may use health-information in their underwriting or rating processes, such as life, disability, or long-term care insurance.

Q. What are possible concerns?

The availability and dissemination of genetic information raises several concerns. In the antidiscrimination context, entities could make decisions about an individual and her abilities based on her genetic information, such as an increased predisposition for developing a particular health condition. Additionally, genetic information is arguably very personal. It indicates not only our proclivity for disease but any number of other attributes, such as our lineage or even our talents. In fact, an individual’s genetic information can sometimes form a significant aspect of her identity. Thus, beyond discrimination, if genetic information is simply too accessible, dignitary harms could occur as the result of intimate information being made public. Moreover, these concerns are not only familial but intergenerational. Because families often share genetic traits, revealing an individual’s genetic information can have a lasting impact not only on her personally but upon her loved ones.

Q. What laws are in place to protect health-related information from discriminating against individuals? GINA?

GINA, which outlaws genetic-information discrimination in health insurance and in employment, provides the primary protection against genetic-information discrimination at the federal level. Several states also protect genetic information in the health-insurance and employment contexts. Some states also have statutory provisions protecting the privacy of genetic information.

Q. We are not only talking about people, but also plants and animals, right?
Genetic information within the law also relates to plants and animals, including intellectual property issues relating to genetic modification. However, my area of research predominantly deals with human beings and the effects of genetic information on not only our medical problems but on our everyday lives.

Q. Have there been any precedent-setting cases in this area?
Not yet, at least in my particular area of expertise— genetic-information discrimination. The absence of precedent actually inspired my first paper on GINA, Preempting Discrimination: Lessons from the Genetic Information Nondiscrimination Act, published last year by the Vanderbilt Law Review. But as of yet there has not been much litigation.

Q. Do you see genetic law continuing to grow both as a field of practice and in importance? And how do you see it developing in the future?
Genetic law will undoubtedly grow in scope and importance. Science will continue to advance and the law will inevitably have to respond as a result. That is precisely what makes this area so fascinating to me—its ever-evolving nature.